Forum:
Not Diagnosed With a Recurrence or Metastases but Concerned —

It has been over a year since I had my surgery and six months since I completed treatment and I still can't get past the fact that I had a positive lymph node. It still haunts me. I find it hard to understand why some breast cancer goes to the lymph nodes and others don't. I have talked to so many women whose pathology was worse than mine and whose tumors were larger than mine and it did not travel to the lymph nodes. My tumor was 2.1 cm and grade 1, strongly ER/PR positive and negative Her2 with no other negative factors in my pathology other than the fact that it went to the sentinel node. I had very aggressive treatment with bi-lateral, dose dense chemo, radiation, oophorectomy and now on Arimidex but I still worry a lot about recurrence. I have read the stats over and over again and I realize that my odds aren't so bad with a 15% to 20% chance of recurrence in five years with the treatment that I had but I still worry a lot. It seems like everyone places such a high importance on whether the lymph nodes are negative or positive, more so than ER/PR status and her2 status. I wish I could just accept it and stop worrying so much but when I start to feel good about the future I remember that I had a positive lymph node and don't feel quite so positive. Anyone else feel the same way???

I had 28 outta 29!!!!! To be honest, there are lotsa women who progress to IV with NO nodes. Yes, it is an indicator, but not the end all. You will calm down over time, especially if you get into a routine so that you don't dwell on it! Hope I didn't blow your mind. Talk soon, Michelle

I had mast. Jan.31, 20006 and she took 27 nodes and 24 of them were positive. I cannot seeem to let go of the cancer coming back. Now my shoulder blade on the same side is real sore but to scared to tell my Dr. Has anyone heard of it coming back to the shouldblade?

HiI just found out that I have IDC and at least 2 nodes. I am waiting for surgery and am very worried about the possibility of more nodes. May I ask what % ER+ and PR+ you were? I know that I am ER+ and PR+ from the needle biopsy. Thank you. <!--color--> <!--color-->

I am 42 (soon to be 43) and was diagnosed with IDC, 4 cm tumour and 3 positive nodes in Oct 05. I was also er/pr+ and her-.

I am 10 months out of chemo and 6 months out of active treatment with the exception of hormonals and Zoladex injections to chemically shut down my ovaries.

It is all so overwhelming right now for you being in the very early stages of this journey, awaiting surgery, tests and more waiting. Once you have your surgery, get your pathology report (usually 1 week after surgery) and have a plan of attack you will feel a little more at ease knowing that you are doing something to kick cancer in the butt!

The worrying, fear, anxiety,anger tears and anticipation of what lies ahead in this journey is the worst part and very NORMAL.

Being er/pr+ are good as hormonal theraphy is available to you once active treatment is finished--surgery, chemo and/or radiation.

It is a long physically and emotionally exhausting journey but you will be surprised at how much of a fighting spirit you have when you have to do it.

This time last year I was bald, exhausted from treatment and this year I have dark, curly, curly hair --am happy, healthy and NED (no evidence of cancer) in my first followup checkups last month. I am proof that you can come out the other side of breast cancer and live your life beyond this disease.

I had 28 nodes removed - 1 of which was positive ( in the UK they take all they can find during the mast / lumpectomy) then check to see if it had spread.Yes i would rather it hadnt spread but it had spread somewhere it could be found and 1/28 is sure better than 28/28!!Deb

I was dx'd in February at age 43. 3 nodes out of 25 positive, ER/PR+++. My onc told me that with chemo, rads, and Tamoxifen, and possibly Lupron, I have an excellent chance of survival and should plan to be a crazy old cat lady.

Hi ImckenzieWe had our mast on the same day. I had 9+ nodes, but that was 9/9, so everyone examined was positive. It freaks me out, not all the time, but alot. Especially when I hear about someone who has reoccured with stage 4 like a friend at my church or EE. I know that everybody with bc worries about reoccurence and I understand why because it can come back no matter what, but it seems like the intensity of the worry increases when you are diagnosed at a latter stage. I know my Onc hasn't given me a green light (can't even get my port out for at least several more months). Oh well, when I pray about this I remind myself that it doesn't matter to God how many nodes were positive, He is still in charge.

They really have no good way of knowing if it spread. Susan Love said 30% of people with negative nodes have had it spread and 30% with positive nodes have not. It could spread through the blood vessels and bypass the nodes. Unfortunately they have not created a test to find out whether or not it has spread so this is their very gross estimate which they can only perform after extensive surgery on us.

Just as a side note to this post, June is the month with all of the relay for life events going on and it is so amazing and special to see women in their 70's & 80's who are so many years out of treatment and doing fine. Really something when you think that they didn't even have the resources that we do now. That alone gives me hope. This year I'll walk as a 2 year survivor!!!!

I was diagnosed in Oct with idc,stage 2a,one node positive and this has driven me crazy also. But you have to think, they say a tumor has been growing for eight to ten years before it is detected. Mine was at least 1.4 cm so ya figure if it was going to spread, it would have already done so.Also, if it is in the lymph nodes, they are doing their job by cleaning up. Weird way to look at it, I guess.

Hi,
This is my first time on the site, but it has been very comforting to read the comments. I had 10 nodes removed that were positive. 8 were microscopic.
That was 8 months ago, and I have had several clean scans. It is difficult not to worry, but I really try to be positive and spend time with my neices and nephews and beautiful weiner dogs, which all make me very happy!
God Bless all of us!
CrazyGracie

I had my lumpectomy on Wednesday. They took 15 nodes during my five hour surgery. I get the pathologist report back on Monday but my surgeon has informed me that he could tell right away the first three had cancer cells in them. I will begin chemo after my incisions heal. My fits diagnosis was DCIS stage 0; however after an MRI and surgery, they presume it may be more likely a stage 2. Everything depends on my path report. I am 47 years old, negative estrogen, negative progesterone, 3+ positive her-2/neu. The doctor has talked abot reconstructive surgery down the road. Not sure what Monday will bring.

I see you are new here, and just want to take a moment to respond. You've come to a good place for support; most of us here have some form of breast disease, from new lump to high risk to DCIS to invasive cancer.

There's a saying here I learned. Prepare for the worst, but hope for the best. There's a lot in those eight words I've come to understand. No one wants chemotherapy for instance, yet it has offered life for most of us with invasive breast cancer. A decade or so ago, Herceptin was breaking ground, and now HER+ disease is found to respond so well to it, and recurrence to be cut by almost half.

So, my hope for you is that you do not despair. Breast cancer is a very treatable cancer nowadays. I came to hear just this past week at a breast cancer talk, that most breast cancer diagnosed after 2007 will survive their diagnosis. I don't have a statistical reference for those words, but the source was major university hospital breast cancer research/clinician based, and no fellow cancer specialists corrected the statement. That sent shivers up my spine, since it so reflects all the true determination of patients and researchers and clinicians alike over the past decades to make headway on breast cancer.

I hope you'll post more should you wish. The circumstances are difficult, but we welcome you to breastcancer.org discussion forum. Lots of great information on the sites main page. And we're here 24/7.

Take care, Roxi.
Tender

It cannot be emphasized too strongly that treatment of each patient is a highly individualized matter. (FDA-approved labeling for warfarin (Coumadin) NDA 9-218/5-105)

Dear Tender,
Thanks so much for your kind and comforting words. I really think the hardest part is just not knowing what lies ahead. I so agree with your philosophy and will keep it in mind for my upcoming treatments, body scans, treatments etc. Thanks for sharing.

I am so thankful for early detection and the new technologies that God has provided us with. My plight the last few weeks has opened my friends and family members eyes to the importance of mammos. It's hard to believe that so many people out there do not care enough about their own bodies to take care of themselves. Thanks for your words of encouragement. I look forward to meeting some truly inspiring women to share my ups and downs with. This has been a great site to meet new friends such as yourself. I'm sure the emotional roller coaster will take me for quite a ride. I absolutely love my team of doctors and surgeons and find comfort in knowing I'm in good hands.

The path report after my mastectomy said one out of 4 nodes was positive. After my mastectomy and prior to starting chemo, a couple of nodes showed up on the CAT scan. So they thought that before starting chemo I should have another surgery to go after more lymph nodes. 6 out of 12 were positive that time. I had thought that the lymph node excision would be easier to go through than the mastectomy, but it wasn’t, because I had an infection after it, so that delayed chemo by a month or so.
I don’t know how many lymph nodes I have left in that area. I think I read that different people have different numbers of nodes to begin with, and also that the surgeons don’t always know how many nodes are in the excised tissue at the time it is removed. If anyone has any more info on that, that would be great.
It is hard not to think about recurrence at first, in the midst of the numbercrunching atmosphere of the path report, but it gets easier with time and as we get stronger. I try not to think about it, but of course I do, especially when checkup time is approaching
I think I am lucky to have made it this far with NED. Since I finished radiation almost 3 years ago, I've had periodic odd sensations under my armpit. One feeling comes and goes and later a different feeling comes and goes. I had mentioned this to the onc, but all my scans after radiation came back clear, so I guess I just have to live with these occasional sensations, until the next tests, or until there is some pronounced change.
Cp418, I too blamed myself for not catching it sooner. (Though nothing had shown up on the mammogram 9 months earlier, I should have noticed the lump sooner.) The onc said the same thing you did: that there is no point in looking back now, but to move on with life. He is a very spiritual person and this outlook reinforces the benefits of viewing the future positively. It has been sort of a new way of thinking for me anyhow. Funny how the bc experience helps move us along on our thinking. Take care,
Sue

I was someone who had Chemo first, with at least four pos nodes, and a complete reponse, not one cancer cell left, so for those of you that had chemo after, you must remember that chemo can kill the cancer cells!!! If its killed it in the nodes and breast, its likely to have killed any rogue cells is my understanding. Also surgery works, so even if you do not have a complete response, surgery can remove it all. Pretty good odds if you ask me, i have to remind myself of that constantly though LOL.

Ladies I had no lymph involvement whatsoever...........I had Dose dense Chemo, Rads & Tamoxifen........I still went mets..... Do not waste anytime worrying about this. Live each day for the perfect gift that it is. To all who have said it is a crap shoot your absolutley right. I mean really , why did any of us get it in the first place?

It will be 5 years since I was dx (March 29,2004) and I am still NED. I did not have neo-adjuvant chemo. In fact, my tumor was taken out in two pieces because my first surgery was supposed to be the removal of a cyst since my mammo and ultrasound were normal. So the surgeon and me were shocked when it turned out to be cancer!

Anyways, I had a mastectomy, lymph nodes removed, AC/T chemo, 30 rad treatments, tamoxifen for a year then a hysterectomy and oophorectemy and am now on aromasin. I am tired and I do get every virus it seems... I have gained alot of weight in my gut which I have trouble getting off... I do tend not to feel well most of the time... malaise, achy, sinus, and a lack of vigour or energy. But I AM CANCER FREE.... for what that is worth.

I do not know why I just vented. I just wanted to let you know that there is hope. Positive nodes are not the "best" predictor of recurrance.

And, I do believe at my next follow-up in May I will be able to stop the aromasin and I do think alot of my aches and pains will leave me then. So I have hope to that I will feel much better soon.

I agree with Janis (Fitz) I have always believed that the lymph system is doing its' job when the nodes are positive. I had a huge tumor, 5.5cm and no positive nodes, my friend had a teeny tiny tumor with 19 positive nodes. I also agree that positive nodes are not the best predictor or recurrance.

what a wonderful forum. I was just diagnosed 2 mos ago, found lump with self exam. i had to have two surgeries. the first was sentinal node dissection and lumpectomy. pathology came back that sentinal node had 2 mm cancer cluster and the other was .2mm. and also the margins of tumor were positive. second surgery path just came back and they took 20 lymphs this time, all negative. they had to excise the nipple and aerola (unfortunate location of the tumor) and the margins are negative and neg for pageats (sp?) disease. So right now we are trying to figure out what to do since there were two pos nodes. i know i need radiation and hoping for the 5 day brachy but i am wondering if just doing the tamoxifen and the medication that puts ovaries to sleep would be enough instead of IV chemo. Ive started the naturopathic treatment (injections of vitamin C and B to boost immune system and help with fatigue) as well as changing diet completely. I am ER PR positive and HER2 negative, mother had breast cancer on one side and passed of ovarian. I will be getting laparascopic hysterectomy in future as well. I am 41. thanks so much for reading and i have such admiration for all who have posted, definately a sisterhood.

Hi everyone. I appreciate this thread. I am three weeks out from my last rad tx and I try not to worry about recurrence/mets, but I do. I know we have/do all go through the worry part. I am going to therapy because I have been waking up at nights-not only from hot flashes, but also because I fear and worry over every small sign and I don't want to get checked again or rechecked, though I know I have to . I like the comments that the node is catching it from spreading. That will help me today.

THX lexi, i am going to go ahead and do 4 rounds of TC. Onc says this will be suffice to get anything that may have spread and help with recurrence. I was really afraid of chemo at first but the onc explained that chemo today is diff than the chemo i saw 20 yrs ago with my mom. And its better to get it now than later and if it means a few months of side effects, i would not always have to wonder what if. thx all! and i hope you have an easy summer